I forgot to update on the blog yesterday, but WE ARE HOME!!! We spent last night in our own bed, and it felt wonderful! Wooo hoooo! I slept from 8pm until 6 am straight, which is a lot of sleep for me. Here's a little update, then on to the kidney news :).
Monday night was not a fun night. They couldn't get her tube to drain, though it was draining around it well, like Dr. Zuniga said it likely would. Starting at about 1 a.m., they kept coming in about every 30 minutes trying to get the tube (that was draining the vesicostomy site) to work. They kept trying to flush it, thinking it was clogged. It was hard to sleep with them coming in and out, but we got some sleep here and there. Dr. Zuniga came in at 6:30 a.m., checked her vesicostomy, and saw that the tube was out, which is why it wasn't draining. He said he was going to take it out anyway and so he wasn't concerned at all.
We had two different tests that needed to be done, and they were scheduled for 3:00 and 3:30. The first test was to check her kidney function and the second was a swallow study. We hung out, did crafts, visited with friends, then we went off to the studies. The swallow study went well and we saw that Madi is not aspirating on her food, which is great! It also doesn't seem to be getting stuck in any little pockets in her throat or anything, so that is great news. She coughs quite a bit when she eats, and it's reassuring to know that it's not anything too problematic. We went back to our room and were discharged about an hour later, getting us home at about 5:30. Our friends Ryan and Leslie brought us a very yummy dinner and it was great to rest and eat a yummy meal as a family!
This morning I got a call from Dr. Zuniga, our urologist (I say "our" since every one of my kids has seen him; even Conner!). He wanted to check on Madi, we chatted a bit about Ramya and her urinary stuff, and then he checked Madi's kidney scan so he could give me the results from that. Her left kidney should be functioning at about 30%. The results of the scan said 1.5%, but he said you really can't even measure that low, so it's likely some where between 1.5 and 6%. So, basically her left kidney isn't really working at all. My heart sank a tiny bit when I heard that, but then came the good news. Her right kidney doesn't look like a typical kidney of a child with spina bifida (which is often times smaller, shaped differently, etc....). Her right kidney is actually larger than normal for a child her age, but it's a good thing! It functions super well, and makes up for the lack of her left kidney function. He said her blood labs showed completely normal kidney function and that you would never know her left kidney doesn't function, because her right functions so well to compensate. I asked what that meant in the long-run, and he said as long as her right kidney stays healthy, which it should, that she shouldn't ever need a transplant or dialysis or anything because it functions so well. He compared it to what he sees with kiddos born with only one kidney. He did say, though, that if the kidney doesn't grow/start functioning better with her having a vesicostomy, we may want to think about removing it. He said since it's not really doing anything anyway, but still runs the risk of getting an infection, if we are in there for another surgery anyway, we may want to remove it and then not have to worry about it getting an infection or have to worry about the reflux that was on that side. I'll have to research that a bit more but we don't have to worry about that right now anyhow.
Madi is healing pretty well. She had some pain this morning but felt better when I gave her some medicine. She also has some pain when I change her diaper, but other than that, as long as she is sitting or laying and resting, she doesn't hurt too much any more. I'm so glad! She really is such a trooper and such a sweet little girl!
Thank you so much for all of your prayers for my little gal. We really appreciate you!
Monday night was not a fun night. They couldn't get her tube to drain, though it was draining around it well, like Dr. Zuniga said it likely would. Starting at about 1 a.m., they kept coming in about every 30 minutes trying to get the tube (that was draining the vesicostomy site) to work. They kept trying to flush it, thinking it was clogged. It was hard to sleep with them coming in and out, but we got some sleep here and there. Dr. Zuniga came in at 6:30 a.m., checked her vesicostomy, and saw that the tube was out, which is why it wasn't draining. He said he was going to take it out anyway and so he wasn't concerned at all.
We had two different tests that needed to be done, and they were scheduled for 3:00 and 3:30. The first test was to check her kidney function and the second was a swallow study. We hung out, did crafts, visited with friends, then we went off to the studies. The swallow study went well and we saw that Madi is not aspirating on her food, which is great! It also doesn't seem to be getting stuck in any little pockets in her throat or anything, so that is great news. She coughs quite a bit when she eats, and it's reassuring to know that it's not anything too problematic. We went back to our room and were discharged about an hour later, getting us home at about 5:30. Our friends Ryan and Leslie brought us a very yummy dinner and it was great to rest and eat a yummy meal as a family!
This morning I got a call from Dr. Zuniga, our urologist (I say "our" since every one of my kids has seen him; even Conner!). He wanted to check on Madi, we chatted a bit about Ramya and her urinary stuff, and then he checked Madi's kidney scan so he could give me the results from that. Her left kidney should be functioning at about 30%. The results of the scan said 1.5%, but he said you really can't even measure that low, so it's likely some where between 1.5 and 6%. So, basically her left kidney isn't really working at all. My heart sank a tiny bit when I heard that, but then came the good news. Her right kidney doesn't look like a typical kidney of a child with spina bifida (which is often times smaller, shaped differently, etc....). Her right kidney is actually larger than normal for a child her age, but it's a good thing! It functions super well, and makes up for the lack of her left kidney function. He said her blood labs showed completely normal kidney function and that you would never know her left kidney doesn't function, because her right functions so well to compensate. I asked what that meant in the long-run, and he said as long as her right kidney stays healthy, which it should, that she shouldn't ever need a transplant or dialysis or anything because it functions so well. He compared it to what he sees with kiddos born with only one kidney. He did say, though, that if the kidney doesn't grow/start functioning better with her having a vesicostomy, we may want to think about removing it. He said since it's not really doing anything anyway, but still runs the risk of getting an infection, if we are in there for another surgery anyway, we may want to remove it and then not have to worry about it getting an infection or have to worry about the reflux that was on that side. I'll have to research that a bit more but we don't have to worry about that right now anyhow.
Madi is healing pretty well. She had some pain this morning but felt better when I gave her some medicine. She also has some pain when I change her diaper, but other than that, as long as she is sitting or laying and resting, she doesn't hurt too much any more. I'm so glad! She really is such a trooper and such a sweet little girl!
Thank you so much for all of your prayers for my little gal. We really appreciate you!
1 comment:
Jamie, I had NO idea that Madi's kidney was SOOO bad. That is a huge blow! I'm so glad to hear that she has super kidney on the other side. Prayers as always!!!! <3 you lots!
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